Sunday, August 26, 2012

Sunday, August 26th


Tuesday is the BIG day around here, the first day of school. Both boys will have teachers they already know which makes the transition a little easier. I had the opportunity to sit down with Mac’s teacher and principal on Friday to talk a little bit about his special needs as he transitions back into school. Any anxiety I had was quickly put to rest after speaking with them. The whole St. Margaret School community has gone above and beyond to make sure both boys have everything they need to be successful in the upcoming year.  We will continue to take it one day at a time since there is no road map of what to expect from Mac or Liam.

Although I am excited for them to start the new year and try to get back some normalcy in their lives I am a little nervous for myself. I think about how this time last year I was putting the final preparations together for my own classroom and looking forward to meeting my class. Once school starts I will have a lot of free time on my hands. It seems now whenever I have a few minutes at home alone I use them to get my emotions out and cry. I just do not want to be overcome by this sadness for all that Mac and Liam have lost over the last 8 months.  I would never choose this life for myself or anyone else but feel like as long as I do not live “angry” all the time I can get by. I just hate this life for my boys. They deserve so much better. They deserve to always have “good days” like most 7 and 9 year olds. They deserve to have a mother who doesn’t smile to hold back her tears every day.  They deserve to have a family that can talk about plans for a future without a black cloud hovering over all the time. I just wish I could give them what they deserve. I know what is happening is not a reflection on our parenting or anything that is in our control, but I think all parents want better for their kids than what they had for themselves. It is hard realizing I cannot give that to my kids because they have already seen, heard, and felt too much! I am forever grateful for the fact that Mac is doing so amazingly well but most days feel like it is not good enough for him.
                                                          
 We will never know what caused this cancer or how long Mac had lived with it before it was found. We will never understand why there are so little resources and funding for these little heroes that smile and laugh through their horrific journeys. But I do know it has forever changed me and my entire family.  I only wish I could say it was for the better.

Mac is scheduled for his next MRI on September 5th. Please keep him in your prayers.

Thank you for following and allowing me to get out my thoughts and feelings.

Tuesday, August 21, 2012

1 Week until School!


As we enter our last week of summer vacation I am filled with so many emotions.

Liam is slowing slipping into a depression as each day passes and it gets closer and closer to school starting back up. It seems he has grown rather fond of his staying up late reading The Simpson’s comic books and then sleeping until 10. Although this last week will be the first week all summer that I don’t have to constantly nag him to do his summer reading or math since we finished it all on Friday. I don’t know who was happier about it me or him! I literally got up from the table when the last word was written on the final book report and did a jig!

Mac continues to amaze us with this strength and endurance. His hair is growing quickly and he even told his Occupational Therapist he was looking forward to starting school again “a little bit”. I am hoping his need for perfection will relax a bit when he starts school. He is so hard on himself when he makes a mistake. I only wish he could see himself through my eyes and see the constant reminder of courage, faith, hope, and all things in this world, that he is to me.

We have had some of the best times this summer as a family. When Mac was at Fenway Park last weekend and very innocent woman asked what his bracelet was for, when it was explained he would be throwing out the 1st pitch for the Spinners she responded with “how did you get so lucky?” I know nothing was meant by it but the comment made me want to cry and scream and have a fit any 2 year old would be jealous of. “Lucky” is not a word I would use to describe Mac or the reason he had the opportunity he had at Fenway Park.  “Lucky” is not a word I would use to describe the daily battles Mac faces just to try to be a “normal” kid. “Lucky” is not even a word I would use to describe the good days we have together as a family because for each and every one of those days Mac, Liam, Billy and I fight with everything we have just to get to them and sometimes through them. I am forever grateful for those good days but don’t feel “lucky” to have them.

As the boys return to school most parents have hopes their child does well, gets along well with others, and maybe even finds that one subject that will turn into a lifelong love or career for them. This year, I hope Mac finishes 1st grade and Liam learns how to be a kid again without so many grown-up worries. Please continue to send prayers and positive thoughts. 

Sunday, August 12, 2012

August 12, 2012

Mac continues to do well. They upped his chemo dose from 50% of the total dose to 75% last Thursday. At first he seemed to be doing really great with it but he has been getting sick first thing in the morning the past 2 days. We have no complaints though because after he gets sick he feels good for the rest of the day.

Liam is also doing well. It has been so helpful to have such a great social worker for him to talk to. We are in the process of looking into a boy scouts group for him to get him more involved and around kids his own age. We are hoping this will help him get a break from our "new normal" life too.

We have a great week ahead. We are going on a boat ride on Tuesday night in Boston Harbor with Cops for Kids with Cancer and Saturday is our big day at Fenway with the Spinners for the Futures of Fenway game. We are all looking forward to watching Mac throw out the first pitch and meet some of the Star Wars characters. Tickets are still available if anyone is interested in joining us!

All in all we are all doing really well. I have to be honest my anxiety about school starting is growing a bit. Only because I have no idea what to expect though. I feel so blessed to know that with Mac's return to St. Margaret School he will be re-entering one of the most generous and kind hearted communities I have ever been a part of. I know they will keep me informed and keep his AND Liam's best interest in mind at all times. I just have never been good with unknowns as I have said before. Luckily, I am married to a "go with the flow" kind of person to help balance us out!

Thank you all for continuing to follow our journey and the continued support.